A rare form of muscular dystrophy has wreaked havoc on Mary MacDonald, with the disease keeping her dependent on a wheelchair since 2001 and reliant on care workers for the past decade.

However, the P.E.I.-born woman says she has also suffered at the hands of the provincial government after battling for access to her adoption records for decades in order to help pinpoint what her disease was and whether she passed it on to her own son.

MacDonald, who has adult-onset GNE myopathy, said doctors were unable to accurately diagnose her condition for years due to the unknown factors surrounding her genetic history.

She and her son, Rhys MacDonald, are both calling on the province to open up its adoption records for the sake of other families, noting that adult adoptees may be unknowingly passing along genetic illnesses to their children.

“I lived in fear for years that I had unwittingly transmitted this to my son because this is a genetically inherited illness,” said MacDonald. “It’s infuriated me to no end for them to come up with excuses why adult adoptees can’t have access to adoption and medical records.”

MacDonald sent her story to an advisory committee now reviewing whether to open up the province’s adoption records.

MacDonald was born in Charlottetown in June 1956 to mother Verna MacLeod and a father with the last name MacDonald. She was taken to a foster home within a week of her birth.

She later grew up in eastern P.E.I. with adoptive parents she describes as abusive.

In her early 20s, after fighting with the P.E.I. government to get information on her parents, MacDonald eventually discovered their identities by running an ad in The Guardian.

After making contact with her maternal family, she made arrangements to meet her mother who had since moved to Toronto but returned to P.E.I. every summer.

However, MacDonald’s mother died unexpectedly just a couple of months before that meeting could happen.

“I never did get to see her and I was very, very shaken up by that because I had gone through such effort to find her,” said MacDonald, noting the only time she saw her mother was at the funeral.

Left feeling disillusioned, MacDonald’s life soon took a different direction, and she gave birth to a son named Rhys.

However, shortly after giving birth, MacDonald began experiencing difficulties with her mobility.

It began with tripping and falling, persisted into leg cramps and soon MacDonald started developing a limp and had to hold onto railings when climbing stairs.

She was diagnosed with muscular dystrophy in 1988, although doctors were unsure what form and kept asking about MacDonald’s family history since the disease is transmitted genetically.

While MacDonald tried to gain access to the medical information in her adoption records, the province refused to release them despite the fact that her mother was already deceased and that she knew her identity.

MacDonald was only able to get a vetted copy of the records after a neurologist wrote to the province’s child services director explaining the potentially life-threatening genetic condition.

MacDonald was not accurately diagnosed until 2013 after undergoing genome sequencing testing in Ottawa.

After years of searching for relief, and with little help from the province, MacDonald was advised her son would not inherit the devastating illness. The disease is a recessive inheritance, with one gene coming from her father’s side and the other from her mother’s side.

MacDonald said both her parents were likely oblivious to the fact they carried the gene. She also feels her birth parents’ relatives may be unaware they could be carrying it.

While MacDonald wants to see P.E.I.’s adoption records opened up, she would also like to see the province held accountable for the years of suffering she feels it caused her and other adoptees.

“I blame much of the distress on the P.E.I. government. A person is made to feel as if they’re doing some sinister deed by trying to track down your own birth mother,” said MacDonald. “This has got to stop. They’re putting adult adoptees through this kind of torture. When they have an illness and are trying to get answers they get stonewalled by the government in P.E.I.”